Patience

"I am extraordinarily patient, provided I get my own way in the end"
(Margaret Thatcher)

Some truth to the above quote. Problem is, I have to keep redefining what "my way" is. I think I'm now on Plan "H", at least. I suppose that's life, eh?

I am exceedingly tired of "hurry up and wait". It's been 7+ long years of waiting for something. Yet again, here we sit, going nowhere fast ... waiting for the months to pass so Jack can sit up in his wheelchair and "engage" in life again. I can't wrap my head around the fact that Jack has been flat on his back since July 28th. I'm not sure why it bothers me so much, Jack doesn't seem to have a problem with it! Jack continues to be happy and content. He is doing awesome from a medical standpoint -- no signs of infection, his O2 sats have been consistently 100% and his heartrate is back to his baseline - all signs that he is comfortable and feeling good. I've been told to be patient because there is a light at the end of this tunnel ... I just fear that it might be that of an oncoming train :-) The pessimist in me (or perhaps the realist) is wondering just how long the "good times" will last.

Jack sees our local ortho this coming Wednesday for an x-ray, which will be sent to our St. Louis ortho. I'm anxious to get an x-ray, as I want to be assured that the hardware is still where it is supposed to be and nothing has shifted or broken off. We've got an appointment with the general surgeon in a few weeks to talk about getting the broviac out. When I called to get an appointment, the person on the phone asked if I could get the records from St. Louis to them. Yeah, right ... if you've got room for a few shelves of records. I just laughed and told her that they really don't need the records as I can give the doctor all the information he needs.

I'm hoping to get the "ok" from the St. Louis ortho to get Jack out of his full body jacket by Christmas. If we can cut off the portion that stabilizes his leg and just keep him in the torso part, we can get him up in his chair. All my siblings will be home for Christmas this year -- I have two brothers and a sister who live out of state (and two sisters who live here in Phoenix). Between us, we have 19 kids! This will be the first time we've all been home in about 15 years and most of us have doubled our families since that time. Of course, we want to have a family portrait done, but if Jack can't sit in his wheelchair, I'm not sure how he can be in the picture. I've got to believe he can get out of the full body brace by then.

The pictures are from this past week. I so badly want to pick Jack up and hold him. It's so hard not to be able to wrap my arms around him. I've got to be content with simply holding his hand right now. I know ..... patience ............

Lazy Sunday

Not too much excitement going on at the Schrooten house, which is always a good thing. Jack is doing well and is through with the IV Vanc. The plan when we left St. Louis was to follow-up the 6 week course of Vanc with 11 months of an oral antibiotic. However, since a specific source of infection was never identified, since his bandemia and other indications of infection were on their way down before we even (reluctantly) agreed to put in the broviac and because we don't have the orthopedic docs "in our face" forcing us to put him on antibiotics, we've decided to forego the prophylatic oral antibiotics. This decision isn't made easily and, if we are wrong and there is an infection in his hardware, I suspect something should show up soon that would let us know. However, I'm very comfortable with the decision. As far as getting the broviac out, I'm going to call this week and try and get something scheduled for about a month out. My biggest stressor is making sure when he goes back to the operating room to have the broviac removed that everyone in the room understands that they can't just pick him up and move him to the table, that he must be moved in a specific way and handled very carefully. I figure the only way I'll get them to listen to me is to bring his post-spinal fusion x-rays. That should do it, don't you think? I know Jack isn't breakable, but I've got to believe there is a reason the ortho in St. Louis wants him flat on his back for 6 months. I'm already stressed out about this and I haven't even met the surgeon yet. I so want to be through with doctors and medical stuff!

My latest challenge has been with the school district which is not timely providing Jack with the services he is entitled to under his IEP. I'm sending off a complaint to the Department of Education tomorrow. I really don't have the time or energy to deal with this kind of thing, but it's not fair to Jack to ignore it and it's wrong for the school district to get away with it. I do tire of always having to advocate ... wouldn't it be nice if people would just do what they are supposed to?

I posted a few pictures of the kids doing what they do on a lazy Sunday. Jack hanging out on the couch watching the Rams-Cardinals football game, Mary reading a book, Hilary on the computer and Eric stuffing his face with Cheetos (and why is my kid eating Cheetos in a white shirt???). Time for me to start the laundry.

Have a great week.

I Can Only Imagine

For those of you who may not have seen this video about the remarkable father and son team of Dick and Rick Hoyt ... I just have to share. You'll need 4:13 minutes and a box of Kleenex.

CAN

If you haven't heard the story ...

Eighty-five times Dick Hoyt has pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlbars -- all in the same day. Dick has also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him accross the U.S. on a bike. And what has Rick done for his father? Not much -- except save his life.

The love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs. "He'll be a vegetable the rest of his life" Dick says doctors told him and his wife, Judy, when Rick was nine months old. "Put him in an institution". But, the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way" Dick says he was told. "There's nothing going on in his brain." "Tell him a joke," Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain. Rigged with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!" After a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked out "Dad, I want to do that." Yeah right. How was Dick, a self described "porker" who never ran more than a mile at a time, going to push his son five miles? Still, he tried. That day changed Rick's life. "Dad" he typed, "when we were running, it felt like I wasn't disabled anymore." That sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon. "No way" Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years, Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially -- in 1983 they ran another marathon so fast they made the qualifying time for Boston the following year. Then someone said "Hey, Dick, why not a triathalon?". How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried. Now they've done 12 triathlons, including four grueling 15-hour Ironmans in Hawaii. When asked why not try and see how he'd do it on his own, Dick said "no way". Dick does it purely for the awesome feeling he gets seeing Rick with a smile as they run, swim and ride together.

Two years ago Dick had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. The doctor told Dick that if he hadn't been in such great shape, he probably would have died 15 years ago. So, in a way, Dick and Rick saved each other's life. Rick who has his own apartment (and receives home care) works in Boston, and Dick, retired from the military and living nearby, find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including Father's Day. That night, Rick will by his dad dinner, but the thing he really wants to give him is a gift he can never buy. "The thing I'd most like" Rick types, "is that my dad sit in the chair and I push him once".

Three more days

Only three more days of IV Vancomycin. Yeah!! Mark will be so happy. Since Mark was at the hospital when they did the training on the broviac, he got to learn how to care for it and administer the vanc -- so, I figured I'd pass on the training and let Mark handle it. I haven't had to deal with the broviac/IV meds at all. It's unusual for me to give up just a bit of "control" and for Mark to handle a "nursing" task. As Mark will be the first to tell you, eight years ago he would get lightheaded just walking into a hospital .... now look at all he can do!

Jack's broviac site looks marvelous ... thanks for crossing all appendages on his behalf (and for the prayers too). As for how long the broviac will stay in - I'll request for at least another month just to make sure he doesn't spike a fever or give us any other indication that there is still an infection somewhere in his body. I'm not sure who will take it out. I'm going to ask for a CT surgeon since a CT surgeon put it in. I'll have to see what my pediatrician has to say. I suspect it will be near impossible to find someone to take it out -- since they won't want to touch someone else's "work".

I got an email from Jack's neurologist today asking if I'd give consent for her to check a sample of Jack's DNA from his frozen muscle sample that she has been saving in her lab. She is going to look for a gene mutation in a particular protein. I think it is awesome that she still has Jack in the back of her mind and continues to try and figure him out. She said they will be sequencing the whole gene so it will take at least six months before I'll hear if there is a defect in the gene. At the end of the day, it is just "information" ... something I so desperately wanted 8 years ago. It doesn't mean so much to me today. But, it might help someone, somewhere along the way.

Jack is very happy these days. If only I could capture 1/100th of his patience and contentment with life ....

I'll post some updated pictures soon.

The "E-Man"

Eric got his new glasses today! I know, it's been almost 2 months since he saw the ophthalmologist in St. Louis, but I've been a bit preoccupied. He was too funny when he first put them on, it was if he was seeing for the first time. Now he just says everything looks "floaty".

Speaking of Eric ... I got a phone call last night from his teacher. It's not a good sign of things to come when your preschooler is already getting calls to the parents. It seems that Eric has been trying to sneak toys out of his classroom -- under his shirt -- to bring home. He's been caught twice now! Good grief, it's not as if he doesn't have enough toys of his own.

I suppose it might have something to do with the chaos of the last two months and all the attention that has been paid to Jack. Although, it's par for the course for Jack to get most of the attention in our house. Who knows how all this Jack stuff will affect my other kids long term, but I guess I'd better start looking into military schools for Eric now :-)

On the Jack front ... I almost hate to post this, but we've encountered another "problem". The area where Jack's broviac enters his chest is *slightly* red and with a little bit of puss. Ugh! Jack's disposition is fine and he has no fever. So, at this point, we are treating it with a topical antibiotic ointment and hoping it might have something to do with being in the body jacket yesterday and perhaps rubbing against the stitches holding the line in place. We'll see how it looks tomorrow. I'm scared to call my pediatrician because I don't want to hear him tell us Jack needs to go to the ER. Don't worry, if I thought Jack looked *bad* because of this, I wouldn't hesitate to make the call. Please keep your fingers and toes crossed that this resolves without medical intervention.

Ciao and goodnight.

All is well

The ortho said the bumps on Jack's back are his spinous processes and not hardware. Phew! The ortho thought the body brace was a bit much and he thinks it's crazy to keep him in the body brace and in a reclining position for 6 months. I'm just not sure I want to rock the boat though ... I think I'll stick with the St. Louis ortho's protocol at this point. The orthotist bubbled out the area in Jack's body brace where the bumps were hitting and we're good to go.

Jack's pediatrician had them do yet another blood draw yesterday because he still wasn't sure about the numbers. I guess they need to hit him over the head before he will believe them. His potassium is low - which makes sense because it was low in the hospital and he was getting supplemental potassium there. "C-diff" has also been mentioned. Which would also explain the low potassium. It's just a vicious cycle when you are on meds, which is why I've always been opposed to any type of maintenance meds and why I stay away from doctors!

This too shall pass ................

Pictures from today are Jack getting put in the car - poor kid, it looks like he is being restrained and he hasn't done a thing wrong. The other one is happy Jack after we got home and he got out of the dreadful body brace. His hair is almost long enough to put in a ponytail.

**Michelle (Jack's personal hair stylist :-) -- can you think of any way to cut Jack's hair while he is laying down??

That's the update from here. Thanks for checking in.

We're off to see the orthopod ....

I emailed Jack's St. Louis ortho today because the "bumps" on Jack's back are making me very nervous. They just don't feel like something that belongs there (ie. the spinous processes) - they are not smooth and are almost pointy and they seem to be sticking out more with each passing day. What if it is hardware ... what then? Anyway, I mentioned all of this to the ortho and asked if he thought Jack should be seen by our local doc sooner than next month, to which he replied he should be seen this week. Jack's local ortho fit him in first thing Wed. morning. After that appointment, it's off to the orthotist's office, who also gratiously agreed to fit us in. When I called and asked if there was any possibility our orthotist could see Jack, I was told "for Jack, Brett would do anything". How awesome is that?!

My pediatrician called and said he doesn't believe any of the numbers from Jack's most recent labs are accurate, so he ordered more labs today. He said all Jack's labs should be "stat" because if the blood sits around for any length of time, the results can be messed up. I called home when the nurse came to draw the blood and asked if they knew it was a stat order. He said that the doctor's orders didn't say stat. Hmmmm... In any event, he said he was headed directly to the lab. Let's hope Jack's numbers are all good.

On a very sad note, my friend ... Bob Cimarelli passed away today from pancreatic cancer. He has two young children who will miss their daddy greatly. Go fly with the angels my friend.

Update

Sorry for the break in updates. Nothing really exciting going on ... which is a good thing. I did email a picture of Jack's back showing the bumps sticking out to his ortho in St. Louis. He emailed me back saying that he reviewed Jack's x-rays and the picture and he thinks it's probably Jack's spinous processes (you'll have to google that if you want to know what it is :-), but it could be the spinal implants - although less likely. He wants us to see our local ortho to have it checked out (and then what???) We have an appointment in October with our local ortho and I don't really see any urgency in having it looked at sooner. The ortho also pointed out that we need to make sure he doesn't get pressure sores on those areas because as he says "if the spine implants are becoming prominent as the swelling subsides and the skin would breakdown the implants would become infected. We both know what that would mean for Jack." Yikes! Guess we'll have to watch those areas very closely. I do not want any more complications!

I got a call first thing this morning from Apria telling me they got the labs back and Jack's blood sugar is "critically" low. The woman asked me how he was doing. I wanted to say "oh my gosh, just terrible, he is flat on his back in bed and hooked up to life support". But, I didn't think she'd find the humor in it! I just got a call from our pediatrician's office and, of course, our doc isn't in this weekend and the guy who called hasn't a clue what is going on or why they are drawing the labs. He said there could be a lot of reasons for low blood sugar. I told him Jack was fine and he was okay with that answer. He also said Jack's vanc levels are now a little low. I asked about some other numbers that were elevated last time that are indicative of an infection. They are higher than last week. Ugh! He suggested I call the ID docs in St. Louis and give them this information. Yeah, right ... I'll get the on-call doc who likewise won't have a clue what is going on and will wonder why I am calling St.Louis when I live in Phoenix. It's not worth the hassle and it's unlikely they'd do anything with the information on a weekend. Our regular ped will be in on Monday, we'll see what he has to say, but I suspect there will be changes to his vanc dosage and who knows what else next week.

Not much else going on here. Mary is at Irish dance practice, Mark is out running errands, Hilary is on the computer, Eric is harrassing the dog and Jack is watching videos. My house is a disaster, but I just have no energy to clean. I am definitely in need of a swift kick in the pants to get me motivated to get up and move.

Hope you all are having a nice weekend!

*Cindy ... I crave "normal" :-)

I really didn't need to know

I spoke with Jack's local orthopedic surgeon today because he will be doing the follow-up x-rays and sending them off to the ortho in St. Louis. I told him about the surgery, the complications, the recovery plan and what is going on with Jack as of now. His words were "sounds like they threw the whole kitchen sink at him". He went on to tell me that he doesn't use screws with his neuromuscular kids -- he uses wires (sounds so much more tolerable) nor would he have braced Jack - which means that Jack would be able to sit up by now if we'd had the surgery done here. When I mentioned about the traction they put Jack in to do the surgery -- he acknowedged that "some places still do that". Guess he doesn't "rack-um" either. It never really occurred to me that there would be completely different operations/approaches to solving Jack's scoliosis problem. I guess it's shame on me for not asking enough questions. Not sure I needed to know the information I got today. At the end of the day, if Jack "survives" this whole recovery period and can sit up in his chair at the end of six months, it won't matter. If he can't, well ... I won't even go there yet. I do have to say I so much prefer the personality of the surgeon here in Phoenix and when I told him that we're not going back to St. Louis, he said, jokingly ... "so, I get him by default". I guess he does! Fortunately, he is a very easy going guy with no arrogance about him.

Jack is back to getting his OT this week and he is very glad to be doing his "work" again according to his therapist. We're counting the days until we can be done with the IV vanc and get the broviac out. We will probably get Jack out of bed sometime this week to give him a change of scenery.

Have a good evening and thanks for checking in.

On a happier note . . .

Meandering thoughts

Jack is doing "OK" ... mom is feeling "blah". We've been home for a week now - plenty of time to get settled back into the normal routine of life. Problem is, I'm having a heck of a time getting there. I find myself constantly lost in my thoughts, unable to focus and just not being very productive. My philosophy of life has generally been "$h#t happens - so just deal with it". Yet these days, I'm finding it much more difficult to "deal with it". Every morning I pass the same sign on my way to work that lets me know that the turn off to Interstate 8 and San Diego is only a few miles up the road from my exit. You have no idea how much I want to keep on driving until I hit the sandy beach! If only it was possible to truly escape from it all.

Before this last year, my "claim to fame" had been my ability to keep Jack out of the hospital and away from doctors. No small feat for a child with all of Jack's issues. It's not that I don't like doctors ... for the most part, I think doctors are terrific people. However, spending too much time around medical people forces the realization that Jack isn't a typical kid and I don't live a typical life. You may wonder how I could think otherwise given Jack's obvious medical interventions, but you would be surprised how easy it is to be blinded to what you don't want to see, especially when - on the surface - my days are much like everyone else's. I get up every morning, get myself ready for work, drag three kids out of bed, shove breakfast in them, make lunches for school, argue with them to brush their teeth and struggle to get them into the car so that we can pull out of the driveway before the clock strikes 7:11 am. The difference is, I am greeted every morning by a nurse (Mary Poppins, actually!) and I leave my house without one of my children, as he sleeps innocently unaware of the morning chaos, with little understanding of what the world is like outside of his protected universe. Okay, so maybe there are a few more differences (too many to list). However, from the outside looking in, we've managed to pull off the appearance of a fairly "normal" life. That is, until this last year...

This last year has been a monumental slap of reality that has knocked me out of my comfort zone in a big way. Starting with Jack's unplanned surgery last summer, followed by a year with a lot of respiratory illnesses requiring more doctors' visits than the last 4 years combined and culminating with a major surgery that caused Jack a great deal of pain, requiring too much time in the hospital and a recovery period from hell. Add to that, the fact that we were finally given a name for Jack's disease and he is now officially one of "Jerry's Kids". Yep, there's no denying it any longer ... I am the parent of a medically fragile child who has a neuromuscular disease that is stealing away his health more and more each year. Through this blog, I am also sharing - for the first time with many of you - a glimpse into our not-so-normal life. It's tough to live it, but even tougher to admit.

Anyway, enough about how I'm feeling ... after all, this blog is supposed to be about Jack! Jack is pretty much laying in bed bored out of his mind wondering what the heck hit him. I so desperately want to pick him up and hold him, but it's not a possibility right now. So we stand over his bed and talk to him, read him books and mostly change out the videos he watches all day long. We've not gotten him out of bed because that would require putting him in his body jacket, which is more like a torture device for all involved. The area on his back where "something" is sticking out (a lot) is freaking me out. I'm told it's his ribs, however, the typical anatomy doesn't have ribs sticking out alongside the spine. I considered emailing the orthopedic surgeon to get his thoughts, but I'm sure without actually seeing it, he won't venture a guess. I did email him and ask what the degree of correction was for Jack's curve. He had his nurse call me (query why he didn't just email me back with the answer) and she told me he was 90 degrees before surgery, 53 after -- a 37 degree correction. I have no idea if that is considered a good result or not. Doesn't really matter ... it is what it is.

It is definitely time for me to end this post ... if anyone is even still with me! I'll try and post new pictures soon, but I'm afraid they are all going to look the same ... Jack laying in bed. I could paint his room and rearrange the furniture every week to give you something new to look at!

I'm signing off ... time to try and get some sleep.